Category: Research & Clinical Studies

I have been intrigued for several years about what seems to be a correlation between Hand Dominance and Parkinson’s onset on the same side. I noticed this in a Dance for PD class several years ago. Most of the people seemed to have a right hand tremor. I did not ask anyone if that was their dominant hand. Just tucked it away in my brain for future reference.

When I met a newly diagnosed Parkie last week, the topic came up. She is left-handed and yes, her symptoms started on the left side. So I went home and checked out the research.

There have not been a lot of studies, and the few recent ones seem to indicate that there may be a correlation. According to a study by Sara M. Scharoun et al, University of Waterloo, from 2015: ” One question of interest here is whether the motor symptoms of PD which give rise to PD initially in the preferred hand are the same as those seen when first expressed in the nonpreferred hand.”

Another study from 2011 by Barrett MJ, Harrison MB and Wooten GF showed a “significant association between handedness and the side of the initial symptom; that is, the dominant side was affected first in the majority of both left- and right-handed patients. Compared with patients with non-dominant side onset, more patients with dominant-side onset presented with bradykinesia, while fewer patients presented with gait difficulty. Patients with dominant-side onset were diagnosed and began dopaminergic medication after a longer symptom duration than patients with non-dominant-side onset.”

I tested out my theory at boxing class today. Eight out of nine were certain the symptoms began on their dominant side (8 righties and one lefty); the ninth wasn’t sure. That, of course, is a ridiculously small sample size, so, to expand my own (very) non-scientific follow-up on this, please complete the following survey. I will provide an update in a couple of weeks once I get a significant number of responses.

A number of you have asked about the Path Finder Laser Shoes from last week’s post. Dan is doing very well with the Path Finder. I am hoping that Vince will have a chance to try them before next week. Stay tuned …….

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I was contacted last month by Walk With Path, a company that makes devices that attach to your shoes to alleviate Freezing of Gait (FoG). The device, Path Finder, provides visual cues with lasers attached to the front of your shoes. This gives the wearer a visual cue to step across, and acts as an external stimulus to trigger walking. Path Finder is available in the UK and in Europe, but not yet in the US.

A study conducted by Professor Bas Bloem and Dr. Murielle Ferraye at Radboud University in The Netherlands has been published, validating the concept of PathFinder for alleviating Freezing of Gait in Parkinson’s. In the article, using a visual cue projected from footwear, demonstrated a significant reduction in ‘freezing episodes’ and the time spent ‘frozen’.

I was asked to try Path Finder, but since I do not have a problem with freezing, I asked if two of the men in my boxing class who do have FoG could give it a try. Walk With Path sent a prototype for them to use for a few weeks. So far, Dan has tried using Path Finder with very good results. He wrote:

“As for my own experience: the units are potentially transformative. For example, I had to go to the bank a few days ago, and had to stand in line with a bunch of people in a small space. Ordinarily, this situation would put me into a full-on freeze. But because I had the units on, I was able to navigate it without incident! Also, when my meds have completely worn off, I can use them to go a short distance (say, 50 feet) and it will take one minute instead of ten.

Limits: they’re not useful outdoors during the day because you can’t see the lasers.”

Here are two videos of Dan in Boxing Class. The first shows him freezing. In the second, he walks easily, with the lasers to guide him. The results were remarkable, as you can see. In the first, the lasers were turned off. You can see Dan is having a difficult time walking, and his arms swing wildly.

In the second, he turned on the lasers and his walk is more natural, and his arm swings have calmed down as well.

This is a prototype for testing Path Finder in the US. It is not available for purchase yet.

Dan will continue to work with Path Finder for another week before turning it over to Vince to try. More to come in a few weeks.

Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties. Helen Keller

It’s that time of year again, when we look back to see what we have accomplished, and look forward to the challenges and opportunities of the year ahead.

First, I want to thank all of you, the readers of this blog, for following me this past year. It has been an adventure for me. I hope that we will continue this dialogue for many years to come.

It has been 9 years since my double diagnosis of Parkinson’s and Breast Cancer. Hard to believe that it has been that long. I am doing quite well, with my symptoms mostly relieved by medication and exercise. Of course there are ups and downs, especially while living with Parkinson’s. But for the most part, nothing holds me back. Mr. Twitchy and I have been traveling extensively, and plan to continue going places near and far, as long as we can.

Some of the highlights of our past year:

The best part: The continued growth of this blog has been a blessing beyound description. The ability to connect with so many, to share information — and inspiration — with each other, to confirm that we are not alone and that we are, in fact a community, has brought joy and meaning that is difficult to put into words. Let’s continue to read and comment and inform each other; and it would be a thrill to meet any (and maybe many) of you at the Kyoto World Parkinson’s Congress in 2019.

The most curious part: The post with the most views in 2017 was actually from 2016; “Breast Cancer vs Parkinsons” discussed how the diagnoses are seen so differently, with the former being “acceptable” and the latter something to keep hidden. The dichotomy seemed to resonate with a lot of people. Sex and the PD Woman came in a pretty distant sixth place. Not sure what that means. (Maybe an update with pictures in 2018?)

The most humbling part: Being named one of Stanford Medicine’s Favorite Parkinson’s Blogs, one of Feedspot’s 50 top Parkinson’s bloggers (there are a lot of great bloggers on both lists, including many of the bloggers that I have been following since long before I began writing this blog) and being chosen as an official blogger for the 2019 World Parkinson Congress.

The most exciting part: Working with the Parkinson’s Foundation to create the study Women & PD TALK, which grew out of the Women & Parkinson’s Initiative two years ago. Led by the Parkinson’s Foundation and funded through the Patient-Centered Outcomes Research Institute (PCORI), Women and PD TALK is the country’s first national effort to address long-standing gender disparities in Parkinson’s research and care based on the recognition that the disease affects the sexes in different ways. Its goal is to develop new patient-centered recommendations to improve the health of women living with Parkinson’s. It has been a pleasure to work with Allison Willis, M.D., University of Pennsylvania and Megan Feeney, MPH, Parkinson’s Foundation, two true luminaries in the Parkinsons world. We have been privileged to work with teams of Patient Leaders and Health Care professionals who are planning forums in 10 different locations. The first forum was in San Francisco in December and offered an exciting start that exceeded our expectations.

Some exciting prospects for 2018:

The Women & PD Talk Forum in Los Angeles, on January 27, which I am honored to co-chair with Adrienne Keener, M.D. and Ali Elder, PT. This will be the 3rd of the 10 forums being held around the US.

The anticipated report and recommendations from Women & PD TALK for improving care and outcome for Women with PD.

Working with the World Parkinson Coalition to get ready for Kyoto in 2019

Watching for, and sharing with you, the latest news on PD . We seem to be inching closer to finding the root causes of Parkinson’s and possible treatments to reverse the damage. Will this be the year for the big breakthrough?

Oh, and we are expecting our 4th grandchild in May. So there’s that, too.

Dr. Laurie Mischley, of Bastyr University, has been tracking People with Parkinson’s (PwP’s) for several years for her “CAM Care in PD” study. When I spoke to her at the World Parkinson’s Congress last fall, she explained that this is the only study looking at how people are living with PD now and following them to see who is having a more positive outcome and why. Data is collected with twice annual surveys sent to the participants. Multiple models were used to examine the association between diet, lifestyle factors, and PD severity, with Patient Reported Outcome (PRO-PD) scores used as the outcome variable. She just released an abstract published in “Oxidative Medicine and Cellular Longevity” on September 10.

I will not try to summarize the entire report. You can read it here. However, I will give you some of the key findings.

The Good:

A plant- and fish-based diet, similar to a Mediterranean diet, is associated with the lowest PD severity score. Fresh vegetables, fresh fruit, nuts and seeds, fish, olive oil, wine, coconut oil, fresh herbs, and the use of spices were all associated with statistically significant lower rates of disease progression.

DIET SODA WAS ASSOCIATED WITH A FASTER RATE OF PD PROGRESSION

Consumption of canned fruits and vegetables was a strong predictor of PD progression. Stick with fresh fruits and vegetables whenever possible.

Soda, specifically diet soda, was also associated with a faster rate of PD progression.

A few other things to stay away from include meat and fried foods.

Nutritional supplements: Only coenzyme Q10 and fish oil were associated with statistically significant reduced rates of PD progression. The use of Melatonin for sleep produced inconclusive results. Iron supplements increased PD progression.

And finally, organic foods were associated with a lower rate of progression.

What does this mean for us? I have basically followed a Mediterranean diet for years, however, I am allergic to fish, so I often each chicken instead. I haven’t eaten red meat in years. I never buy canned fruit and vegetables. My downfall is cheese. I am not sure I can eliminate that completely from my diet, but I can certainly cut back on it. I recently substituted almond milk for milk to use with coffee and cereal. Years ago I switched to Tom’s toothpaste and deodorant to avoid the excess aluminum exposure. The good news is that the progression of PD has been relatively slow for me.

This study will be continuing and more PwP’s are still being recruited. If you are interested, contact Dr. Mischley at neuroresearch@bastyr.edu.

Research is beginning to prove what the medical community has long suspected: that women experience Parkinson’s differently as it relates to diagnosis, symptoms, progression, treatment complications and care

Allison Willis, M.D., M.S., co-lead of Women and PD TALK

At 10:00 pm, the husband looks at his wife and says “it’s time to go upstairs to bed.” And he goes upstairs and gets in bed. 45 minutes later, his wife finally comes upstairs. He asked her what took her so long. Her response: I had to clean the kitchen, put the dirty clothes in the laundry, walk the dog, make sure all the doors and windows were closed, check on the kids and on and on……..

Yes, there are definitely differences in Men and Women. Women have historically been nurturers and caregivers. They take care of their children, their spouses, their homes. And many of them are still working. When diagnosed with a disease like PD, their entire support system is turned upside down. It can be difficult to let someone else be THEIR care-giver.

In the last few months, as co-lead for the Parkinson’s Foundation’s Women and PD TALK , I have been talking to Women with Parkinson’s about issues facing them as women with a chronic illness. As mothers, and as lifelong caregivers, many women have never even thought to ask for help when they need it. It often takes longer for women to receive the diagnosis of Parkinson’s Disease than it does for men. Many are told that it is in their head. They are often told that they are depressed, especially if they are younger. Most women go to their doctors alone. Many have shared that they go to therapy, alone. They often go to support groups alone. One woman said that she stopped going to mixed support groups because most of the women who came were care-partners and assumed that she was, too. She felt that she could not get the support she needed from a mixed group.

Many women with Parkinson’s seek out support systems that include other women with PD. After all, who else would understand what they are feeling? They need the camaraderie and friendship that Women-only groups can provide.

One thing I noticed last year when I attended the World Parkinson Congress in Portland, was that the overwhelming majority of the men with Parkinson’s were accompanied by their wives. The number of spouses who accompanied their wives who have Parkinson’s was far fewer.

The interesting thing is that most men fare much better than women as the disease progresses. Is this because they have someone that will take care of them and advocate for them, even if they don’t ask for help? Many of the women with PD that I spoke to are now care-partners for their husbands, which means that they are not getting the support they need at home. This is unfortunate, because being a care-partner can take much more energy than these women with PD have to give. And they suffer because of it. Unless they can get help in their home, they often do not have the time to exercise daily and take care of their other needs. I am sure that the stress of being a care-partner must take its toll as well. Women who live alone have their own difficulties in accessing adequate care.

What is the solution for these women with Parkinson’s? Are there differences in treatment? Care? Are their symptoms different than men’s? Why does is take longer for women to get diagnosed? We will be exploring these issues and more at the Parkinson’s Foundation’s Women and PD TALK forums that will be taking place in 10 communities around the country in the next 6 months. Stay posted for more information.

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Dear Readers: I love to see your comments and get your emails as we share our collective experiences. I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctors.